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  • #31
    Amy,

    That was so sweet of you to say those things
    I really did mean it. I know how expensive it can be going to a doctor in another state. The cost of the airfare, car rental, food, and hotel.......whew that is just too much to deal with on top of everything else. I would think of it as an honor to help out. Kara has dealt with so much so if I could do one little thing to help her out I would feel blessed to be able to do so. I feel that way about any of us here dealing with this dreadful disease. We really need each other and God has blessed me with some great friends here. You are also one of the kindest and sweetest on the board. I always love the way you treat people with such kindness and respect. You have a very nuturing and sweet soul. You are very much appreciated
    Miss Bessie

    Galatians 6:2 - Carry each other's burdens, and in this way you will fulfill the law of Christ.

    Hebrews 13:2 - Do not forget to entertain strangers, for by doing so some people have entertained angels without knowing it.

    Proverbs 4:23 - Above all else, guard your heart, for it is the wellspring of life

    Comment

    • #32
      Kara:

      I wish I could write more 2 U but I am zombiemibied/ We love ya,let us know what can help...I like the unused dollar idea b/c many people havd a
      small unusable amount on their cardsk but if uou take that to the store they will load it allonto one. (people did that for me when I first became ilL)

      I out night y, night

      Tracey
      I.C. DX'd following my "second hysterectomy" (the remaining ovary, that kept bursting and bleeding 2 years after my hyster/right oompherectomy, was removed in 2003. I was a special ed teacher. I am now very lost, and feeling rather hopeless in my life.

      Medications I CURRENTLY take:
      90 mgs Ms contin (45 mgs Am/PM)
      Percocet as needed
      Topomax 100mg day
      Ambien 10 mg bed
      desipramine 25 mgs




      If people are good only because they fear punishment, and hope for reward, then we are a sorry lot indeed.
      Albert Einstein

      Comment

      • #33
        Help with flights

        Did someone say they need help with air transportation for medical reasons? If so, you might want to check these out.


        US Medical Transport:
        MMA Mercy Medical Airlift Charitable Air Transportation1-888-675-1405, Mercy Medical Airlift (MMA) is a nonprofit organization dedicated to serving people in situations of compelling human need through the provision of charitable air transportation. MMA is totally supported through charitable giving and the services of volunteer pilots and office assistants.

        Angel Flights
        Angel Flights is a volunteer corps of private pilots and "Earth Angels" who combine a love of flying with the spirit of grassroots volunteerism by flying patients and their families to the critical health care they need. Their mission is to ensure that no patient in need is denied access to distant specialized medical evaluation, diagnosis, treatment, or rehabilitation for lack of a means of long-distance medical air transportation.

        Angel Flight NE: As far north as Maine, as far west as Minnesota and as far south as Florida and Louisiana. Into Eastern Canada occasionally:
        Angel Flight Westcovers flights originating in the Western States: Alaska, Arizona, California, Colorado, Idaho, Hawaii, Montana, New Mexico, Nevada, Oregon, Utah, Washington, Wyoming
        Angel Flight Central: Midwestern States
        Angel Flight Central: Texas, Oklahoma, Arkansas, Louisiana, New Mexico, Mississippi and Tennessee.
        Angel Flight Mid-Atlantic: District of Columbia, Delaware, Kentucky, Maryland, Michigan, North Carolina, Ohio, Pennsylvania, Tennessee, Virginia and West Virginia.
        Angel Flights Southeast: South Carolina, Florida, Alabama, Georgia, Florida, some parts of Louisiana.

        *For the links, go to: http://hkpp.org/general/ppresources.html Scroll to the bottom for USA.

        Comment

        • #34
          That's another great resoursce...Does anyone know the rules about Ron. MacDonald houses? I mean...like I know they are for families of sick patients but I don't know if that is just sick kids, or would include a sick patient who is from out of town but has to stay close to go back and forth after surgery and release? I know in Portland they have some facilities, not sure if it is Ron. Mc Donald for Long term out of the area patients and their families. Like apartments, and they pay just a small deposit...paid for by donations and grants.

          Maybe you could check with that hospital and see if they have any of that kind of housing?
          I.C. DX'd following my "second hysterectomy" (the remaining ovary, that kept bursting and bleeding 2 years after my hyster/right oompherectomy, was removed in 2003. I was a special ed teacher. I am now very lost, and feeling rather hopeless in my life.

          Medications I CURRENTLY take:
          90 mgs Ms contin (45 mgs Am/PM)
          Percocet as needed
          Topomax 100mg day
          Ambien 10 mg bed
          desipramine 25 mgs




          If people are good only because they fear punishment, and hope for reward, then we are a sorry lot indeed.
          Albert Einstein

          Comment

          • #35
            hotels out of state

            Kara we were recently out of state for our dads surgery and I called the local hotels about giving a discount for our family. We got it too and it was very reasonable. I am also a Travel Agent and have resources I may be able to use to get you a great rate!

            PM me and will try my hardest to help you!!!
            Last edited by blueeyes46; 06-03-2007, 10:56 AM.

            Comment

            • #36
              Um, i know this sounds odd but try a convent. In Montreal Québec i stayed in a convent. They had a whole floor just for hospital patients. I only paid 30$ per night and we were two- breakfast was included and we had access to fridge and drinks, we could also get very cheap meals, plus lots of emotional support. I had this in London ontario too but they sold the convent. They even had an indoor pool but i hadn't brought my swim suit- i paid 12$ per night in London. Ok, you have to go down the hall to pee but it's much safer feeling than a youth hostel, very clean, very friendly and supportive if you want it to be. No tv in your room but there was a big screen tv just down the hallway with cable, dvd, movies, board games, puzzles, other people to socialize with if you feel like it...

              Chantal

              Comment

              • #37
                These are all great ideas that I will have to check into. I am not going to schedule surgery until I can afford it. So far I'm planning on doing this while on Disability. Thank you all for being such WONDERFUL support. I could not do any of this without you.

                Warm Hugs!!!

                Kara
                Complex Case: Severe IC 1999, Interstim 2001, Endometriosis 2001, End Stage Refractory IC 2002, Bladder Removal (Cystectomy) 2002, Gall Bladder Removal 2005, Infertility 2003, Urethra Removal, Bladder Reconstruction (Urethrectomy/Indiana Pouch) 2006, Celiac Disease 2007, Adhesion Disease 2007, Pudendal Nerve Entrapment, Ovarian Cysts, Vestibulitis, Vulvodynia, Total Vestibulectomy and removal of both Skene's Glands, 2007 and Coccydynia 2007. Fibromyalgia and, Chronic Myofascial Pain Syndrome both in my neck and knees, 2007, PNE Decompression Operation May, 2009.Multiple Chemical Sensitivities, Anesthesia Awareness (to awaken during operations)Pudendal Nerve Decompression Surgery, Revrse Uterine Sling, Sept. 2011

                "One hour at a time, this was NOT my American Dream but it has to work out somehow."

                I also have some journals of my journeys, past and some present at:
                http://karasnewblog2008.blogspot.com/ and http://icnkaralynn.blogspot.com/

                Most of my Journaling now is currently on Facebook. These are old and my ICN Patient story is very old and outdated.

                Comment

                • #38
                  Another thought: If you contact the Social Services Department at the hospital where you'll be treated, they may have some information about resources in the area.

                  Donna
                  Stay safe


                  Elmiron Eye Disease Information Center - https://www.ic-network.com/elmiron-p...mation-center/
                  Elmiron Eye Disease Fact Sheet (Downloadable) - https://www.ic-network.com/wp-conten...nFactSheet.pdf

                  Have you checked the ICN Shop?
                  Click on ICN Shop at the top of this page. You'll find Bladder Builder and Bladder Rest, both of which we are finding have excellent results.

                  Patient Help: http://www.ic-network.com/patientlinks.html

                  Sub-types https://www.ic-network.com/five-pote...markably-well/

                  Diet list: https://www.ic-network.com/interstitial-cystitis-diet/

                  AUA Guidelines: https://www.ic-network.com/aua-guide...tial-cystitis/

                  I am not a medical authority nor do I offer medical advice. In all cases, I strongly encourage you to discuss your medical treatment with your personal medical care provider. Only they can, and should, give medical recommendations to you.                   [3MG]

                  Anyone who says something is foolproof hasn't met a determined fool

                  Comment

                  • #39
                    I live in Nashua NH!!!

                    if you need a place to stay, i could see about that. its not my place, but i have a nice roomate and a really nice dog and cat to annoy you!
                    diagnosed IC Jan 2007 (though i feel i've had it mildly for years)
                    frequent UTIs
                    No frequency, just urgency and pain!


                    tramadol 50mg twice a day. this stuff works good for nerve pain!!!! (update, i'm down to mostly one pill a day now!)

                    Physical Therapy. if you have pelvic nerve pain or muscle pain, its worth a try. it helped me with the constant burning.

                    TENS may help a little

                    Cystoprotek might be helping as well. i'm getting better as time goes on and this could be why.

                    fish oil, herbal teas, skullcap (might try passionflower for nerves) I'm not very diet sensitive.

                    Went OFF elavil and nortryptiline (worked wonders, but didnt like the weight gain)

                    Comment

                    • #40
                      Nicole,

                      I have PM'd you back.

                      Kara
                      Complex Case: Severe IC 1999, Interstim 2001, Endometriosis 2001, End Stage Refractory IC 2002, Bladder Removal (Cystectomy) 2002, Gall Bladder Removal 2005, Infertility 2003, Urethra Removal, Bladder Reconstruction (Urethrectomy/Indiana Pouch) 2006, Celiac Disease 2007, Adhesion Disease 2007, Pudendal Nerve Entrapment, Ovarian Cysts, Vestibulitis, Vulvodynia, Total Vestibulectomy and removal of both Skene's Glands, 2007 and Coccydynia 2007. Fibromyalgia and, Chronic Myofascial Pain Syndrome both in my neck and knees, 2007, PNE Decompression Operation May, 2009.Multiple Chemical Sensitivities, Anesthesia Awareness (to awaken during operations)Pudendal Nerve Decompression Surgery, Revrse Uterine Sling, Sept. 2011

                      "One hour at a time, this was NOT my American Dream but it has to work out somehow."

                      I also have some journals of my journeys, past and some present at:
                      http://karasnewblog2008.blogspot.com/ and http://icnkaralynn.blogspot.com/

                      Most of my Journaling now is currently on Facebook. These are old and my ICN Patient story is very old and outdated.

                      Comment

                      • #41
                        Kara,
                        I've found amazing hotel deals at sites like priceline.com. I know it's not free, but it could be fairly cheap.
                        mom_in_ma

                        Comment

                        • #42
                          My Doctor is going to look into some way of getting a better deal at the local hotels around the hospital. I have one surgery first to get through. If that surgery doesn't help then I am off to NH.

                          Thanks for all of your continued love and support and great suggestions!

                          Kara
                          Complex Case: Severe IC 1999, Interstim 2001, Endometriosis 2001, End Stage Refractory IC 2002, Bladder Removal (Cystectomy) 2002, Gall Bladder Removal 2005, Infertility 2003, Urethra Removal, Bladder Reconstruction (Urethrectomy/Indiana Pouch) 2006, Celiac Disease 2007, Adhesion Disease 2007, Pudendal Nerve Entrapment, Ovarian Cysts, Vestibulitis, Vulvodynia, Total Vestibulectomy and removal of both Skene's Glands, 2007 and Coccydynia 2007. Fibromyalgia and, Chronic Myofascial Pain Syndrome both in my neck and knees, 2007, PNE Decompression Operation May, 2009.Multiple Chemical Sensitivities, Anesthesia Awareness (to awaken during operations)Pudendal Nerve Decompression Surgery, Revrse Uterine Sling, Sept. 2011

                          "One hour at a time, this was NOT my American Dream but it has to work out somehow."

                          I also have some journals of my journeys, past and some present at:
                          http://karasnewblog2008.blogspot.com/ and http://icnkaralynn.blogspot.com/

                          Most of my Journaling now is currently on Facebook. These are old and my ICN Patient story is very old and outdated.

                          Comment

                          • #43
                            I'm sorry you are having such a hard time. I did not read the tread until now.
                            There is no reason to be embrassed but I know the feeling. I feel that way with IC. I hate telling people it's my bladder. I shouldn't but I do.

                            Wish I could help. All I can say is don't be embrassed here.

                            Ginny

                            Comment

                            • #44
                              Kara,

                              I haven't been on the boards much at all the past few months as I, too, have been having problems. I just saw this post. We had a summer home in NH about 1 1/2 hours north of Manchester (not terribly close, but not a horrible commute, either), but sold it this spring. If we still had the house, I'd certainly do all I could to help. We may purchase a new place in NH in the future, but it won't be for another year or so. Keep me in mind for future reference should this be delayed or you have future need. In the meantime, please know my thoughts and prayers are with you.

                              Annie

                              IC
                              Ulcerative Colitis and IBS
                              Pelvic Floor Dysfunction
                              _________________________________________________________
                              Retirement is great! Work is highly overrated!!!
                              ---My dear hubby
                              ________________________________________________________
                              Never go to a doctor whose office plants are dead.
                              ---Unknown

                              Comment

                              • #45
                                Dear Annie,

                                I may not be having the pudendal nerve surgery for another year so it may just work out that we meet. I have to have one other surgery before the PNE Surgery happens in NH.

                                I will keep you posted! Shucks about your summer home.

                                Kara
                                Complex Case: Severe IC 1999, Interstim 2001, Endometriosis 2001, End Stage Refractory IC 2002, Bladder Removal (Cystectomy) 2002, Gall Bladder Removal 2005, Infertility 2003, Urethra Removal, Bladder Reconstruction (Urethrectomy/Indiana Pouch) 2006, Celiac Disease 2007, Adhesion Disease 2007, Pudendal Nerve Entrapment, Ovarian Cysts, Vestibulitis, Vulvodynia, Total Vestibulectomy and removal of both Skene's Glands, 2007 and Coccydynia 2007. Fibromyalgia and, Chronic Myofascial Pain Syndrome both in my neck and knees, 2007, PNE Decompression Operation May, 2009.Multiple Chemical Sensitivities, Anesthesia Awareness (to awaken during operations)Pudendal Nerve Decompression Surgery, Revrse Uterine Sling, Sept. 2011

                                "One hour at a time, this was NOT my American Dream but it has to work out somehow."

                                I also have some journals of my journeys, past and some present at:
                                http://karasnewblog2008.blogspot.com/ and http://icnkaralynn.blogspot.com/

                                Most of my Journaling now is currently on Facebook. These are old and my ICN Patient story is very old and outdated.

                                Comment

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